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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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Please Help! Only 16.

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Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 1:06 am

Hello. Now I am new to this site and reading all these posts really make me want to burst into tears. Two years ago I started to feel a burning sensation down below. I thought it was urinal track infections. I was too scared to even step foot into the doctors then. So about three months ago I visited the doctor and told her all my symptoms. She just gave me some tablets for an infection even though my sample came back negative. I went again two weeks after from the most horrific pain I have ever experienced to the point where I would cry and have suicidal thoughts. She gave me a swab which I personally did myself and the tests came back all good. I was practical avoiding a physical but a month after that it got so bad that I just. I could not take it. I was severely depressed. I had a doctor examine me and she said she saw nothing!! I was so upset and angry because I feel it! I feel like something is there. I was given ibuprofen and paracetamol and took 12 in total a day which helped with the pain. The pain then went but a couple of days it came back. I can't do this anymore I really cant. I am going for a hospital examination from a urologist soon but I feel as if she will not find anything. I am on the verge of breaking. Please somebody give me advice anybody!! I feel all alone
..

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Re: Please Help! Only 16.

Post  MensRea on Sat Aug 15, 2015 3:55 am

Hey SoHelpless,
I am really sorry for what you are going through. It seems that your pain is unprovoked right? It's a constant pain no matter if its touched or not. Can you tell me where your pain is located? You said you thought is a urine infection, does this mean that the pain is located around the urethra? I am not a doctor Razz but i am asking you because my mother had exactly the same symptoms. She is currently in remission, since she managed to change her eating habits.

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 8:42 am

The pain seems to be located around my urethra and just below it.

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 15, 2015 9:01 am

Yes I believe my pain is unprovoked definitely. A lot of people here seem to find changing their diet helps but im only 16 and still live with my family and have to eat the same things as my Mum believes that the problem is mentally as there is nothing physically to see that could be wrong.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 3:26 am

Ok, you told me the pain is unprovoked, but if you touch the area near of the urethra, does the pain increase? Do you have also painful urination? Sorry for the questions:P but i have also unprovoked pain near the urethra [my mother's pain is little bit different] and i try to understand whether you are experiencing the same problem.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 4:47 am

Yes painful Urination and When I touch the area thr pain increases.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 3:23 pm

We have exactly the same symptoms and believe me it's not in your mind. I have vestibulodynia, and my doctor told me that also the area near of my urethra is part of the problem. I don't know whether your diagnosis will be same as mine, but i suggest you to see urogynecologist. What helps me, is drinking a lot of water, i also take calcium magnesium citrate pills, you can find them online and also amitriptyline [you need a prescription from your doctor]. Amitriptyline pills helps a lot with the unprovoked pain. You only need to find someone who also believes that your pain is real.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 7:56 pm

Thanks a lot! I have made a appointment to see one in November, a long wait but I will definitely try and see if those pills work. Quick question did your doctor straight away realise what it was? If so what signs was there?

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 8:47 pm

Yes she did! It was very easy for her to realise what the problem was, since i have also provoked vulvodynia in the opening of my vagina. However, i have vestibulodynia for 10 years, but the unprovoked pain near of my urethra appeared three years ago [steroid creams are killers!]. If i haven't provoked vulvodynia, it would be more difficult for her to understand the nature of my pain. I am using also a cream, gapabentin 6%, it helps a lot with the unprovoked pain, but you need to ask your doctor to include it in the medical prescription. Btw, don't forget, DRINK A LOT OF WATER.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:03 pm

Thanks a lot. How do you feel now? Does it still effect you as much as it did? I'm only 16 and don't want to have to be in large amounts of pain constantly.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 9:23 pm

Before the treatments it was very difficult to sleep or concentrate. I had constant pain all the time, it's been two months since i started the treatments and i don't experience any unprovoked pain anymore, only provoked. But even the provoked pain is not like before at all. I have to put a lot of pressure in that area in order to feel any pain. I am trying now to reduce to the minimum the provoked pain, it needs time, but at least it does not interfere with my daily routine.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:27 pm

Wow that is amazing. I only wish I could hopefully become the same. I will deifnetely try those Pills and do all I can to get better. Thank you a lot, Really gave me hope that I can solve this problem. Smile.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 9:35 pm

Ah and something else!! Don't wear underwear in bed! This is a very good advice not only for people who have vulvar pain, but for everybody. Btw if you live in London i can recommend you some doctors.

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Re: Please Help! Only 16.

Post  SoHelpless on Sun Aug 16, 2015 9:52 pm

I live very close to London! Please give me the centres and doctors names I would love to get some help if These symptoms persist.

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Re: Please Help! Only 16.

Post  MensRea on Sun Aug 16, 2015 10:12 pm

Inbox! Smile

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Helpless

Post  BpCookie on Fri Aug 21, 2015 3:26 pm

Hello hun, I totally feel for you. To be so young and have to go through this. Never give up hope. Fight on until you find a Dr. who can help you. I have a different problem called Vulva Lichen Simplex Chronicus which causes constant burning. At first I would lay in bed crying and wanting to die. I had went from Dr. to Dr., tried lotion, oils, ointments, meds............but I had no relief. So, I decided to do my own research on line. This helped a lot!!! I would bring the names of different medications that I hadn't yet tried and would give the list to my gyno to get her opinion. In doing on line research I found a really good specialist. So, never, ever give up because there is a Dr. out there that can help you.

Here are some of the things that I have had to do to help my pain. I ONLY use free and clear detergents (no perfumes or dyes) do not use bleach, I use sensitive skin body wash (no perfumes or dyes) and only use water to clean my vulva area. Do not use powders, deodorants or douches. USE A and D ointment after every time you use the restroom. This protects the skin. Sit on an ice pack for about 20 mins at a time. If possible wear skirts. Also I have a prescription ointment called Lidocaine 5% and it numbs the skin.

I hope this helps honey. Your not alone.

hugs to you

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Re: Please Help! Only 16.

Post  SoHelpless on Sat Aug 22, 2015 8:47 am

Thanks that means a lot to me. I won't give up as I refuse to continually live with this pain. Yes it is quite upsetting due to how young I am and I just feel conatantly depressed about it. I hope to solve this problem soon and thanks to this support and website I never feel alone no more and I am dealing with it a lot better. x

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16 TOO

Post  EverythingIsDifferentNow on Wed Sep 09, 2015 10:40 pm

I'm 16 too, I had vulvadnynia like you.
Things that are causing ur vulvadynia:
-something is physically wrong with your spine or pelvis
-your diet

I have wayyyy more advice if u want reply back and email me

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Re: Please Help! Only 16.

Post  KajalMehta on Mon Sep 14, 2015 9:13 am

Hey SoHelpless,
I thing this may cause of kidney stone. I suggest you to have Sonography test.
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Re: Please Help! Only 16.

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